1) The United Nations and civil society : CoNGO and CoNGO Committees ; Mr Cyril Ritchie, President of CoNGO 2011-2018
2) Public Health in the mandate of the United Nations Economic and Social Council ; Mr Navid Hanif, Director, Office for ECOSOC Support and Coordination, UN Department of Economic and Social Affairs (DESA)
3) Rare Diseases : a common cause at the global Level ; Mr Anders Olauson, Chairman, Ågrenska
4) How it all started : the contribution of the NGO community to advancing the cause of rare diseases
+ Ms Abbey s. Meyers, President Emeritus, National Organization for Rare
Disorders (NORD)
+ Mr terkel Andersen, President of the Board of Officers, EURORDIS-Rare
Diseases Europe ; Chairman of the board, Danish Hemophilia Society
+ Prof Min-Chieh Tseng, Founder, Taiwan Foundation for Rare Disorders ; Dean, College of Social Sciences, National Taipei Universit

Panel debate 1 : 11:00-13:30 ; The global state of play of rare diseases.

—> Lunch break : 13:30 to 14:30Buffet to be served by the stairs behind the left side of the Vienna Café

Afternoon Plenary : 14:30 to 18:00

Panel debate 2 14:30-17:30 ; The way forward : acting globally from within the UN SDGs.

Moderator : Ms Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders (CORD) ; Council Member, Rare Diseases International (RDI) ; Former Chair of the Governing Board, International Alliance of Patients’ Organisations (IAPO)

8) How to further carry the patients’ voice at the global level to deliver change ?Ms Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders (CORD) ; Council Member, Rare Diseases International (RDI) ) ; Former Governing Board Chair, International Alliance of Patients’ Organisations (IAPO)
9) The UN Sustainable Development Goals (SDGs) : Implications for Health
in General and Rare Diseases in Particular
+ Ms Lauren Barredo, Manager, Thematic Group on Health, UN Sustainable
Development Solutions Network (SDSN)
+ Dr Nata Menabde, Executive Director, WHO Office at the United Nations,
New York
+ In conversation with Mr Jean-louis Roux, Public Affairs Director, European and International Advocacy, EURORDIS-Rare Diseases Europe
10) Bringing the SDGs to life : spotlight examples of where the eare
disease community can make a contribution
+ Disability and Gender, Ms Maria Montefusco, Secretary of the Council of Nordic Cooperation on Disability, Nordic Center of Welfare and Social Issues in conversation with Dr Gustavo Gonzalez-Canali, Senior Advisor, UN Coordination Division, UN WOMEN
+ Education, Ms Gunilla Jaeger, Psychologist, Ågrenska
+ Employment, Inclusion and Poverty, Video testimonial by Mr Marek Plura, Member of the European Parliament, European Parliament’s Committee on
Employment and Social Affairs ; Vice-President, Disability Intergroup at the
European Parliament in conversation with Ms Daniela Bas, Director, Division for Social Policy and Development (DSPD), UN Department of Economic and Social Affairs (DESA)
+ A Holistic Perspective Mr Tenu Avafia, Human Rights, Law and Treatment Access, HIV, Health and Development Group, United Nations Development Programme (UNDP)
11) Avenues for Global Action : Mobilising all stakeholders in the rare disease
community worldwide on the road to 2030
+ IrdirC : How can international collaboration accelerate research advancements ? Dr Christopher P. Austin, Director, National Center for Advancing Translational Sciences (NCATS) ; Chair, International Rare Disease Research Consortium (IRDiRC)
+ IFPMA : How can the Pharma and biotech Industry help translate scientific opportunities into accessible and affordable treatments ?Dr Philip Vickers, Global Head of Research and Development, Shire on behalf of the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA)
+ orphaNet : How can international classification of rare diseases,
international encyclopedias and resource listings enhance research and
clinical excellence ? Dr Ana Rath, Director, INSERM US14-OrphaNet
+ ICord : How can a cycle of multi-stakeholder conferences stimulate dialogue and actions in different parts of the W-world ? Mr John Forman, Past-President, International Conference on Rare Diseases and Orphan Drugs (ICORD)

Closing session : 17:30-18:00

12) Introducing the NGO Committee for Rare Diseases and its Founding Act
« Rare Diseases and the UN Sustainable Development Goals » ; Mr Anders Olauson, Chairman, Ågrenska
13) Closing Keynote Addresses with an official statement from H.e. Prime Minister Joseph Muscat and the Government of the republic of Malta on the eve of the Maltese Presidency of the Council of the European Union in 2017